Throughout September, which is Blood Cancer Awareness Month, City of Hope will feature stories on blood cancer patients and treatment. Each year, more than 150,000 Americans are diagnosed with leukemia, lymphoma and myeloma. City of Hope’s immunotherapy trials targeting blood cancers, and unrivaled survival among its bone marrow transplantation patients, make it a world leader in leukemia, lymphoma and myeloma treatment.

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Joseph C. Alvarnas

Children with acute lymphoblastic leukemia (ALL) are going into remission at higher rates than ever before – thanks to better treatment that stems from leading-edge clinical trials – but adults with ALL still face significant hurdles in overcoming the disease.

The five year survival rate (or after five years of diagnosis) for children and adults with ALL in remission increased from nearly 41 percent, between 1975 and 1977, to nearly 71 percent between 2006 and 2012. A series of advances in the treatment of children with ALL – including more effective chemotherapy and successful clinical trials – helped improve therapies for all patients.

However, children with ALL have access to a coordinated network of clinical and research sites.

“Unlike adult patients with cancer, approximately 90 percent of children with cancer receive care at participating Children's Oncology Group sites,” Alvarnas and his co-author Patrick A. Brown, M.D., an associate professor of oncology and pediatrics in the John Hopkins University School of Medicine, wrote. “It would be difficult to overstate the importance that this systematic approach to care delivery has had in advancing ALL treatment outcomes.”

Unlike most pediatric patients, however, adult patients do not have a single, coordinated care and clinical trials network.

“Instead, adults diagnosed with ALL face significant challenges in navigating a care system that remains highly balkanized and difficult to navigate, making access to innovative diagnostic and therapeutic technologies elusive,” the authors noted.

Despite expansion of insurance coverage to many previously uninsured patients, gaps within the coverage system continue to prevent many patients from receiving the expert care they require.

“Narrow health care networks, in which patients are limited regarding which hospitals and physicians may provide their care, frequently exclude academic specialty centers or ALL centers of excellence,” according to the authors.

According to a 2015 article reviewing the impact of narrow networks on access to expert cancer care, only four of 19 national recognized comprehensive cancer centers surveyed said they were in all the insurance networks on their state health care insurance exchange.

Despite those challenges, the co-authors noted that ALL patients are in a dramatic period of change. For example, improvements in genetic, molecular and genomic testing are helping cancer doctors tailor treatment for individual patients, what’s known as “precision medicine.”

“As we advance toward a future of precision medicine solutions for patients with ALL, we need to ensure that this lofty vision is not undermined by the prosaic limitations of infrastructural and financial barriers imposed by our often-disorganized systems of care,” the authors concluded. “It requires us as physicians, nurse practitioners, nurses and health care professionals to become advocates not only for our patients but also for systems-based change that can ensure that very patient diagnosed with ALL can benefit fully from the breadth of scientific knowledge and innovative therapeutic alternatives.”